Health Update 7-22-2017
I’m terrible at keeping everyone informed, I sincerely apologize for that. I am so blessed to have so many of you care about me and my well being. I really am grateful for each and every one of you. That’s the primary reason why I started this blog. So that anyone can check in and see how I’m doing.
Most of you may not know that I was diagnosed with an incredibly rare disease in the May of 2016. I know that I’m going to be missing some of the big long medical words (my memory has been severely attacked due to some of my other diseases) but I’ve been diagnosed with Antiphospholipid Nephritis Pauci-immune. I was diagnosed with a kidney biopsy. It was supposed to be simple. 1 poke with a freaking long needle, 4 hours in a recovery room, and a 1 night stay for observation. When in reality I was poked 3 times with that needle, I stayed in a recovery room for 9 hours and stayed 5 nights for observation.
Let’s break this down:
3 jabs with a needle that looked more like a sword. Yea I saw it. Not fun. I’m not afraid of needles anymore. I’ve been getting weekly blood tests for the past 3 1/2 years. I’m used to it now. But I’m not used to this needle going in my back. They didn’t want me to be on any pain meds for the procedure. Just some numbing around the area where the needle would go. I did really well the first time I felt the needle. I didn’t hurt much and I was so grateful when it was over. Then I turned slightly to look at my nurse’s face (She insisted on holding my hand. I get it without makeup on I look like I’m 16.) She looked incredibly worried and unaware of what to do. So she just told me to stay still and that it’ll all be over soon. The second prick was probably the worst. Mainly due to the fact that I was told that it would be a one and done situation. I tried my best to stay calm and to stay still. Then I felt the 3rd prick. And that’s when the panic attack hit. I was then (finally) given drugs to calm down. Or I was at least told I was given drugs and the whole placebo effect kicked in.
My 9 hours of no TV, no music, and no books (that was the worst. Just let me have my book to help me fight off the boredom). But I mean, I get it. They wanted me to sleep and get rest. I did for 3 hours. I can remember looking at the clock and how excited I was that I would be out and get to see my family soon. Then they told me that I would have to stay for several more hours. I had a slight fever and they wanted to make sure it went down. They did allow my mom and my sister to come back and visit me a couple of times so that was nice. (I don’t have a sister technically speaking my by best friend and I look a lot alike so….. 😉 )
I didn’t take long for the recovery room become packed. And I, unfortunately, became overlooked. Now they never told me or my family that I had a slight fever. And I was so drowsy and out of it, I couldn’t tell that I had the chills from the fever. I thought it was just unbearably cold in that room. So I kept asking for blankets. And I was always given them. Soon they gave me a blowup blanket that had hot air constantly blowing into it. It. Felt. Like. Heaven! Probably because I was almost there. Thank goodness at that moment they brought my mom back to see me. My face was flushed and I was sweating heavily. She had the nurse immediately take my temperature. 106.9 degrees. I was delirious and I didn’t know how bad that was. And how I almost died from it. They went and got ice packs and put them all over me. That sucked. “Hey, you’re freezing cold and shivering? Want an ice bath?” No. No, I did not. But it happened anyway. (And I understand that it was good and I’m glad they forced me to now. Back then, I was a sad pouting 20 years old.)
5 days in the ICU. I was supposed to only spend 1 night for simple observation. Then we got a call from my primary doctor (as I have several. All my specialists go to her and she relays the information and our plan to me). When she called she sounded rather panicked. The call lasted all of 30 seconds. She didn’t diagnose me then but told me what was happening in my kidneys.
The reason why they had to use the needle 3 times to get a sample was that each time they would go in all they would pull out was blood clots. My kidneys were filled with them. They said anywhere from several hundred to the thousands range. And that she has no idea if one could travel from my kidneys and potentially hit another vital organ or just go straight my heart and that would cost me my life. She told us to cancel any plans we had because we wouldn’t be leaving for a while. The next day my primary physician and my kidney specialist came in and told me that they had no clue what I had or how to treat it. So they made their best-educated guess. They kept me in the ICU for a couple of more day but they ended up releasing me still not knowing how fatal this disease was or even what it was. They said that they would know in about a month when the biopsy test results came back. And they said to stick close to home in case anything happens.
So naturally, we went to Disneyland. Because if you don’t know how long you’ve got left, why are you just sitting around and twirling your thumbs? My grandpa left me his wheelchair (I couldn’t walk more than 50 paces without being completely winded) and we were off! I have some pretty awesome memories that trip. And then a lot of memories about apologizing profusely to everyone my brother would hit in the shins and he raced me all around the park. (After a while I wished that I could just wheel myself around but we borrowed a transport wheelchair. They have 6-inch wheels. I couldn’t even reach them.)
Although we didn’t go to Disneyland just to be distracted.(okay, we kind did. But we had a mother reason for going to L.A.) My Uncle was getting married that weekend. And I couldn’t miss that happy day! The wedding was gorgeous and completely Mexican themed. It was the best fiesta I’ve ever had. (Having a kidney biopsy the week before was also a really nice excuse NOT to have to go on the dance floor.)
About a month later I got a letter in the mail telling me (in terms only someone who attended medical school could understand) my diagnosis. But something that I got loud and clear (after calling my doctor and asking her to explain) is that I am the 4th or 5th person to ever have this disease. So if you know me, congratulations. You truly have met someone that is 1 in a billion (and then some) 😉
Now all of that happened over a year ago (and gaining 70+ pounds ago. Thanks, Prednisone. NEVER again!). So when I got a call from my kidney specialist a few days ago I was a bit concerned. And I had every right to be. Turns out I have 30% kidney damage rather than the 15% that I was told a year ago. And that I was almost in remission for the last year but unfortunately my numbers have started to rise again. Which means more damage to the kidneys. (They still swear the I still have 100% perfect kidney function. Which doesn’t make any sense to me but ok.) Last week I did a 24-hour urine (TMI I know, I’m sorry) collection. I’ll be getting those results in soon. If it’s still bad they might put me on a different steroid (I was serious about not taking Prednisone again) and/or be redoing my kidney biopsy. I won’t know until my doctor’s appointment that I have scheduled in a couple weeks. I’ll let y’all know which way they are leaning when I find out myself.
Thank you again for all of your love and prayers.
Loves and Hugs,